How in the World Will I Pay for Long-term Caregiving?

Financial planning is an important factor in long-term caregiving.

Having a long-term caregiving plan is a must for family caregivers, especially if their loved one has Alzheimer’s disease or other chronic health conditions. In 2018, the Alzheimer’s Association estimated that the total lifetime cost of care for someone with dementia was  $341,840.

When we placed my husband in a memory care home in 2008, it cost roughly $6,000 a month, which covered a private room and extras like a weekly massage. Everything is more expensive today. The Alzheimer’s Association lists the following median costs for long-term care services in 2021. From what I’ve seen, the costs are typically higher on the East and West Coasts and lower in rural towns, and in the Midwest, the South, and western states.

  • Home care: A paid non-medical home health aide is $24 per hour and $960 per week (40 hours of care).
  • Adult day services: $74 per day.
  • Assisted living facilities: $4,300 per month or $51,600.
  • Private room in a nursing home: $290 per day or $105,850 per year.
  • Semi-private room in a nursing home: $225 per day or $93,075 per year. https://www.genworth.com/aging-and-you/finances/cost-of-care.html

What’s the difference between assisted living and a nursing home?

By the time a person with dementia is ready for a care facility, they need lots of assistance so it’s best to consider a home that offers memory care in a locked-down environment. Locked-down isn’t as bad as it sounds. It just means that the residents can’t leave the facility and wander off and get lost. The exterior doors are locked, but residents are usually free to roam the halls and go in and out of their rooms and living areas.

An assisted living home offers some care such as transportation to doctor appointments and help taking medications. And some offer designated living areas for people with dementia. But generally, residents in assisted living facilities are in fairly good health and are able to take care of their personal needs.

A nursing home provides medical care 24 hours a day. Meals are prepared by the staff, residents usually eat in a dining room, or in their own room, and care is provided ranging from help getting dressed and bathing, to rehabilitation from a fall or bone breakage.

People with dementia and Alzheimer’s disease are usually placed in memory care homes that cater to their particular needs. Memory care homes aren’t exactly nursing homes because not everyone with dementia has another physical illness. But the cost is comparable to that of a nursing home because of the amount of hands-on care that is needed, which includes bathing, brushing teeth and getting dressed, toileting, etc.

Consider respite care

Respite care provides short-term relief for primary caregivers. It can be a life savior when you’re at your wit’s end and “just can’t take it anymore.” There’s no need to feel guilty. All caregivers need a break in order to recharge, destress, and take care of their own needs—which is crucial to staying healthy.

Respite care can be provided at home, in a healthcare facility, or at an adult day center. It can be arranged for a few hours or for several days or weeks. For more information about respite care: https://www.nia.nih.gov/health/what-respite-care, https://archrespite.org/respitelocator

Financial help

As soon as you or a loved one is diagnosed with Alzheimer’s, or other dementia or chronic disease, make an appointment to see an elder attorney. They will inform you of your options and help with long-term planning.

For instance, in Colorado, in 2020, one month in a nursing home costs nearly $9,000. That’s more than $100,000 over the course of a year. Many elderly individuals spend down their life savings on nursing home costs so they can eventually qualify for financial assistance

If both spouses are living, and one of them is healthy, the healthy spouse can be left with little money on which to survive. An elder law attorney can help families avoid this unfortunate, but common, scenario.

The Community Spouse Resource Allowance is useful when there is concern the couple has too many assets to receive financial assistance from Medicaid to pay for long-term care. This particular allowance lets the healthy spouse keep a portion of the joint assets, up to $128,640 in 2020.

Another allowance, the Minimum Monthly Maintenance Needs Allowance, or MMMNA, lets a healthy spouse retain part of their ill spouse’s monthly income. ps://www.robinsonandhenry.com/colorado/estate-planning/medicaid-planning/?utm_term=&utm_campaign=&utm_source=adwords&utm_medium=ppc&hsa_tgt=&hsa_grp=&hsa_src=x&hsa_net=adwords&hsa_mt=&hsa_ver=3&hsa_ad=&hsa_acc=4376139444&hsa_kw=&hsa_cam=14487629423&gclid=Cj0KCQiAhMOMBhDhARIsAPVml-HXnbFv18MpGCumQd7lKb5xGoJ36cvPNwcdGqRFpgnWq63lYsSAYAkaAnCaEALw_wcB

If you plan to hire an elder attorney, please check reviews and ask for referrals for a competent elder attorney. Unfortunately, the elder attorney I hired made a mess of things for me and my family, and I had to hire an additional attorney to straighten things out.

Other options

• Call 800.827. 1000 or visit http://www.va.gov. In addition to Medicare, the person with dementia may qualify for a number of public programs. These programs provide income support or long-term care services to people who are eligible.

• Contact your local family and senior services office. They can provide you with information about help in the home, long-term care options, legal support, Medicare and Medicaid, public assistance benefits, services, and programs, guidance, and tips on accessing services, caregiver support training, and more.

• Contact your local Alzheimer’s Association for information about services and support groups. They offer classes for caregiving on everything ranging from financial planning to how to get your loved one to take a shower. https://www.alz.org/

Taking time for yourself

Caregivers get burned out if they don’t take some time off to recharge. And in the worst-case scenarios, caregivers end up being sick and having to be taken care of. If you don’t take care of yourself, who will take care of the person you were lovingly taking care of?

Here are links to a couple of articles I posted on this blog about ways that caregivers can achieve more peace and less stress. https://archrespite.org/respitelocator, https://barbracohn.com/2020/06/23/20-natural-remedies-for-depressed-caregivers-and-everyone-else/

Have a safe, satisfying, and stress-free (as much as possible) Thanksgiving. And please take a little respite time for yourself, even if that entails just walking around the block for 30 minutes.


Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Is it time to place your loved one on hospice care?

Elderly female hand holding hand of young caregiver at nursing home.Geriatric doctor or geriatrician concept. Doctor physician hand on happy elderly senior patient to comfort in hospital examinationDeciding if it’s time to place a loved one on hospice care is one of the most painful decisions any caregiver will make. After my mom broke her hip, she was put on heavy pain medication. I sat by her side for two weeks and witnessed her hallucinating about bugs flying in the air and seeing dead family members visit her. I thought they were coaxing her to follow them. I believed that she was dying, and her doctor advised me to consider placing her on hospice care. After talking it through with my brother, we agreed that this was the best thing to do.

Well, it ended up not being the best thing. The hospice team was giving her too many meds and my mother was dying from lack of hydration and food because her hospice caregivers were “snowing” her. They gave her too many pain meds and not enough liquids. She slept round the clock and didn’t wake up to eat or drink. When the private caregiver I hired me alerted me to what was going on, I took my other off hospice. She bounced back and lived another couple of years. She never walked again, despite making a whole hearted effort (that’s another story) and welcomed three great grandchildren into the family.

Several years before my mom died, she placed my dad on hospice care. He had an entirely different experience. The hospice team attentively provided care that my mother was incapable of, and he died with dignity.

The day my husband’s doctor suggested that I consider hospice care was a hard one. But I knew that his illness was terminal, and welcomed the extra attention and care that he would receive. At the very end, the loving and tender care that the hospice team showed him and me and my adult children was significant and so appreciated. They provided us with food and beverages, and aromatherapy cream to massage his legs and feet.

Whether your patient has a terminal illness, is getting toward the end of life, or is suffering from acute and painful symptoms, it’s important to know the difference between palliative care and hospice.

Palliative care

Palliative care is an umbrella of comfort and quality of life care which includes hospice care. It isn’t just used at the end of life, but can be very beneficial when the goal is complete healing and cure. Palliative care is not only end-of-life care. It can be used anytime during the course of an illness.

Defined by the National Hospice and Palliative Care Organization, “palliative care is patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice.”

The following points characterize palliative care philosophy and delivery:

  • Care is provided and services are coordinated by an interdisciplinary team.
  • Patients, families, palliative and non-palliative health care providers collaborate and communicate about care needs.
  • Services are available concurrently with or independent of curative or life-prolonging care.
  • Patient and family hope for peace and dignity are supported throughout the course of illness, during the dying process, and after death.

Any individual with a serious illness, regardless of life expectancy or prognosis, can receive palliative care. Additionally, individuals who qualify for hospice service, and who are not emotionally ready to elect hospice care could benefit from these services.

Patients receive the following palliative services in any care setting:

  • pain and symptom management
  • in-person and telephone visits
  • help navigating treatment options
  • advance care planning and referrals to community resources.

Hospice care

Hospice care provides comfort through the end of life when the individual has a terminal prognosis and no further curative treatments are pursued. Hospice care focuses on the pain, symptoms, and stress of serious illness during the terminal phase. The terminal phase is defined by Medicare as an individual with a life expectancy of 6-months or less if the disease runs its natural course. This care is provided by an interdisciplinary team who provides care encompassing the individual patient and their family’s holistic needs.

Hospice should be considered at the point when the burden of any given curative treatment modalities outweighs the benefit coupled with prognosis. Other factors to consider and discuss, based on individual patient situations, are treatment modalities that no longer provide benefit due to a loss of efficacy.

It’s important to know that even if someone is placed on hospice care, s/he may be kicked off after the six-month period if their health improves. Sometimes it’s just a matter of that person beginning to eat and gain weight instead of refusing food and losing weight. An individual might go off and on hospice several times.

Patients receive the following services in most care settings including home, hospice facility, skilled nursing facility, long-term care facility, assisted living facility, hospital (inpatient levels of care only), group home:

Pain and symptom management

  • 24-hour on-call service
  • in-person visits
  • medical equipment
  • related medications
  • inpatient care
  • continuous care in the home
  • respite care
  • volunteer services
  • spiritual care
  • bereavement and counseling services

What you need to know about hospice

To initiate the process, a consultation for hospice and/or palliative care is initiated by the primary care physician or specialist, the patient, or a family member. The consultation is important to provide the patient and/or family with the services provided, as well as to verify that the patient qualifies for the services based on their current health status. If the person qualifies and desires the services their care provider issues a medical order. The hospice or palliative care provider then assigns an RN as the case manager who conducts an assessment of the patient. The patient’s needs are identified and a care plan is created.

  • Hospice does NOT provide round-the-clock caregivers.
  • If the patient gets better and gets off hospice care, s/he might re-qualify for services if they are needed in the future.
  • The patient doesn’t have to go off all their medications. For instance, if it’s flu season, and especially if the patient is in a care facility, s/he will probably still get a flu shot to reduce risk of getting sick and getting others sick. If the patient is on quality of life medications, those can be continued, as well as pain management medications. For the patient who has been on thyroid medications for decades, s/he will remain on those medications.
  • If the patient is uncomfortable with the visiting nurse or CNA, who usually provides personal hygiene a couple of times a week, a new visiting nurse health aid can be provided. The nurse coordinates the patient’s care plan so it’s important that the patient is comfortable with this person.
  • Hospice usually provides the following supplies: bed pads, adult diapers, wipes, barrier wipes/paste, non-latex gloves, wheel chairs, commodes, pressure pads, walkers, shower and transfer benches, air mattresses, hospital beds, bedside tray tables.

You will probably have a choice between a non-profit and for-profit hospice. Consult first with Medicare and your additional insurance provider or with Medicaid to see what is covered and which hospice affiliates they recommend. The Medicare Hospice Benefit pays all related costs associated with the care that is related to the terminal prognosis as directed by Centers for Medicare and Medicaid Services (CMS). Most private insurers have a hospice benefit that pays all related costs associated with the care related to the terminal prognosis. In most states Medicaid pays all related costs associated with the care related to the terminal prognosis as directed by CMS. In all cases, there may be some medications, services and/or equipment that are not included in the Medicare, Medicaid or individual’s policy, so don’t assume anything. Always ask.

Please remember that the more help you have in caring for your loved one, the more comfortable it will most likely be for you and your patient. This is usually one situation in which the adage “too many cooks in the kitchen spoil the stew” doesn’t apply. The more people you have on your caregiving team the better. And if your loved one has a terminal illness, the sooner you research hospice and palliative care the better. Don’t wait until an emergency arises and you are in a panic about helping your loved one. Don’t do it alone. Get help.

Blessings to you and your family.


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Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”–winner of the 2018 Book Excellence Award in self-help– in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.